F.O.P. is short for a disease that takes way too long to say, but is simple - and horrifying - to describe.

"I basically say I'm turning into a human statue," Ashley says, "where if it takes me over before the cure is found, I will not be able to move anything except my eyes and my lips."

When Ashley was two, doctors misdiagnosed her with cancer and, during surgery, amputated her right arm. They diagnosed her with F.O.P. a few months later, when she couldn't move her left arm from the elbow up. Inside Ashley's body, her muscle regenerates as dense bone.

"Eventually my jaws will fuse shut," she says, "where I will have to eat and talk with my lips completely frozen."

A cure may actually come soon; as Ashley says, "They've already given FOP to mice, and they've cured the mice."

But until it does, Ashley must simply hang on and savor the body and precious moments she has.